Had 1st xiaflex today with Dr. Eid

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samsung

Had round one today. Not as bad pain as I thought. Don't get me wrong, it was highly unpleasant. But I didn't throw up, so I count it as a win.

Here is what I would appreciate some advice about.

He said the following:

1. Don't take cialis for at least 2 weeks. Continue with arginine, that's fine.

2. Don't do any traction or VED for 2 weeks. Just the hand modeling following the 2nd shot.

He also does not do any wrapping with coflex, says it cuts off circulation. I wrapped it myself very loosely with one of the Lyon legacy magnets on the underside. He said that was o.k. but be careful. Don't wear it too long. I don't have any bruising as of yet. We'll see what's what tomorrow.

Opinions? I know there are some on here that got good results doing restorex, etc. right away. But I am between a rock and hard place in deciding whether internet people are correct or a world's expert. Hmmm.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

I'm not one to positively weigh in here, but I hope you don't develop any hematomas.  Those really hurt
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

samsung

Thanks man. No bruising yet. Sort of stings a bit. But that's it so far.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Fernapal

My two cents, follow the advice of your urologist to the letter of the law. I'm on my third round and starting  to see some results. My doctor recommended not doing anything until three days after the second shot, then mild stretching to opposing direction of the bend. Good luck and I hope you see progress soon, it's not as painful as people put it, once you get past the notion of your dick and needle in the same sentence.
59 years old, onset of Peyronies's two years ago, 20 degrees of curvature to the left, second round of Xiaflex.

curved

Samsung--- just my 2 cents on this but I would do whatever Dr Eid says.  I would ask him about traction 2 weeks after the second shot and what to do if you get a nocturnal erection.  I was told when I got a nocturnal erection to "very gently" bend the penis in the opposite direction of the curve. As I have written before there doesn't seem to be "one" agreed upon protocol following Xiaflex injections (e.g. some docs wrap with coflex, other don't, some docs are okay with traction and others say hand modeling only, some docs use dopplar to locate plaque while others do it by feel, etc.).
51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no ED
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

Pfract

Since when does Dr eid do xiaflex injections?  

samsung

Pfract, he says he's been doing the xiaflex for quite some time. Only had 2 patients that had fractures as a result. One had sex immediately after and another rolled over in his sleep on an erection.

2nd day and zero bruising. Little lumps at injection site(s). Some pain, but manageable. I'm just using a rice sock. Next shot Thurs.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Pfract

Wondering why it is not mentioned on his website?  

samsung

I don't know. Why don't you call him and ask?
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

Please forum, please help me. Please take a break from water fasting arguments and give me some guidance.

I know nobody will read this and there will be 5 different opinions and/or this will be dismissed as a crazy post and ignored. All I know is I can't go home alive if I don't know what caused this definitively.

Sorry of I sort of just insulted you all but I don't know how else to phrase this.

Here goes:

I got the 2nd shot yesterday. Per his advice and per this stupid forum's advice, I did some gentle traction when I got home. For 1.5 hours in the penimaster pro.

As soon as I was done, my dick began to swell.

Then it bottlenecked like an elastic was tied around it and bent in 2 different directions and a red band formed around it. This took a few hours ro really reach a peak and it is now the next morning and swelling has not abated.

I went out and played in the 1st round of a chess tournament in the meantime. I left after this 1st round because the swelling had gotten to this level. My dick never looks like this.

You are supposed to do modeling after the 2nd shot so I just did as I was told.

Here is what I am asking advice about.

If I caused this, I can't leave the state of NY alive.

I need to know if I have a fracture or not.
When I texted Dr. Eid last night he said to come in this AM and he would examine me.

To my knowledge if you have a fracture you need to get it operated on immediately or you are f'~c<+d.

I need to know if this is just swelling from the shot or if I caused it and if I caused it then I will kill myself immediately. A whole year down the drain in one act. I can't live with that kind of betrayal.

There is no guidance or protocol with this disease. This is the most f'~c<+d up thing in the world. People with cancer are instructed exactly what to do. People with MS know exactly what to do. Doctors follow an exact protocol and procedures. But not with peyronie's. With peyronie's everyone has an opinion. Opinions are an abomination. An absurdity.

I am beyond freaked out. I slept for no more than 5 minutes last night. I don't even know if he will be able to diagnose a fracture. To my knowledge a fracture means more fibrosis and God knows what will happen to the structure and function of my dick now.

He told me it would resolve on its own even if it was a fracture. B.S. B.S. B.S.

What the hell should I do? I can't calm down.

My flaccid dick does not look like this or bend in these directions. It goes left and right and the foreskin is creeping over my glans now. And it has an elastic band around the top and a golf ball stuck in the middle. This is insane. If this is just swelling from the shot I am allowed to live. If I caused this, I die and I die today.

Normal swelling=life
Causation by my hand=coming home to my mother in a pine box

Please advise.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Junior

Hey Samsung,

Don't panic, maybe too much traction after  the shot. My last series of shots were in end of Aug & 4 weeks latter I did VED for awhile afterwards & I got a bigger bruise (blood spot) on the side of my penis exactly where one shot was given;whereas it was smaller when I got the shot.

When I do the VED my penis does swell & then goes away.

I been using the RestoresX everyday since 9/7 1/2 hr twice a day, tried doing the bend onthe RestoreX, I did not like what it was doing to my penis.

Good Luck

Junior
ED - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

curved

samsung... i went through 4 rounds of Xiaflex (8 shots) and a couple of thoughts.  Your penis looks exactly like mine did after the shots.  the swelling will go away in a week - 2 weeks.  I doubt it is a fracture although it may be a hematoma but you would have felt sharp pain with that.  Personally I would not do any traction involving a device within the first 2 weeks of the second shot.  I would do hand modeling only during the first 2 weeks.  After the first 2 weeks I would introduce the penimaster pro or whatever device you choose.
51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no ED
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

samsung

Sorry gents. I should not have written this. I don't need any more replies and I thank the ones who did reply. I just have a terribly difficult time not knowing things.

Dr. Eid said my penis would be much, much more swollen if a fracture. But you can't know 100% without an ultrasound, urinalysis, etc. And that's not happening.

He also said he doesn't like traction devices. At all. And says VED is useless.

A bunch of you swear by VED

A bunch of you do restorex immediately following the 2nd shot.

Some of you do hand traction. Some don't.

Some take Pentox. Some don't.

I just have to learn to accept that I am just here in this crap body for a short time and that there might be a good t.v. show on in the meantime.

But I don't really actually accept that.

I know there is an exact physical cause and a precise course of action. But I will never know it and neither will any of you. Not for a few hundred years and with the advent of quantum computing and AI. In the meantime there is virtually no point to being alive unless you pretend things.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

My results from Xiaflex were much worse than yours and they resolved, but took over a month to get somewhat back to normal.  It was then I decided to stop Xiaflex and go forward with surgery.  Hang in there bud
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

samsung

I'm just reading how xiaflex is same as gangrene. And how some people have blisters a year later. And how some people "crack" the plaque because of immediate aggressive modeling. And how xiaflex dissolves blood vessels. And how some people don't do any modeling because they are in pain. And how some doctors do aggressive modeling and wrapping in coban tape and some don't.

See what I'm saying?

This board is making me psychotic. Uncertainty is maddening to me. I am going to stop reading and checking 24/7 here. There are no answers. I can only do the best I can.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

Plus there are little things in everyone's speech that you don't even notice that mean EVERYTHING to me. TDix, you said "somewhat" back to normal. When I read that sentence, it signals to me that it did not return to what it was prior to Xiaflex and therefore neither will mine.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

Do what is right for YOU.  I have been told here to do traction.  I have been told to avoid surgery at all costs.  I have been told I should have continued with Xiaflex.  I did none of those things.  I dropped the urologist that did my shots and went straight to a specialist.  He recommended surgery for MY case, and I agreed.  No traction, no VED, no Xiaflex.  Was told to go to a high volume implant surgeon.  Point is you will get advice from all directions to go in their direction because it worked for them.  DOES NOT mean it will work for you.  If you are at odds with Dr Eid, go to someone else.  Just because he is praised here does not mean he is the be all end all for YOU.  I was told to Gelman, I did not due to insurance, and honestly I'm glad I didn't as he disagrees with doing my procedure.  Not suggesting you do surgery, just that you do what you feel is right for you.  Many who have had my surgery are unhappy with their results.  I honestly cannot compare my experience until someone else chimes in after using the same doctor.  Just let things calm down and return to "pre shot" status and plan out your next move.  Do not give up man, you can fight this horrible condition
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I say somewhat back to normal because you obviously weren't normal before Xiaflex, which is why you decided to get the shots.  I hate saying back to normal because that would mean no issues if that makes any sense
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

samsung

Ah, I thought you meant back to prior to getting xiaflex. Yeah, I realize it won't ever be back to my pre-peyronies state. That ship sailed. I'll eventually cam down. Seeing your dick turn to hamburger is unsettling. I don't care about that as much as the not having a clear path and not knowing whether I caused myself more injury. And I am scared to get a boner. If it curves worse or anything else I am going to be extremely upset. I am going to stay off the board for a few days now. Thanks for the replies.  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

 Xiaflex gave me huge hematomas and a fracture, so yes I was not the same after my 3 shots.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I agree.  Take a break from here and focus on healing.  Feel free to PM me if you want as I've been through the same, but worse than you  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

samsung

Swelling down a bit today. Not quite so dented under glans.

Any advice as to when you would recommend boner testing? I know not to have sex or masturbate for 2 weeks. But I want to see what ot looks like. I am very scared that it will be worse or shorter. So I want to get it over with to see where I stand. I'm just afraid it will break if it gets hard.  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

You should be fine.  It may appear shorter due to the swelling but that will go away.  Just know it will probably hurt due to the swelling
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TonySa

I'd suggest just follow Dr Eids instructions and don't try anything else...all the options on the forum just seem to be overwhelming you.  Unless Dr Eid says it's ok, don't do etection checks, traction (1.5 hrs is not usually considered gentle traction) etc.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

samsung

Bruising is improving. Zero improvement in curve or anything else. In fact, now that I stopped daily traction my flaccid is way smaller. Turtling like crazy. And now it hurts like a dull sting all day. Been told not to expect anything from first shot though. I checked erection last night. Difficult to tell if it is worse. Maybe a little, but definitely not better. My plan is do 1.5 hours traction 2x per day and do counter bend restorex 2x per day. Restorex almost impossible to keep my dick head in that thing. And it always hurts after. Maddening device. Not well designed. So we shall see.

I think restorex could be combined with a suction head like a penimaster. Then you'd have best of both worlds in one device.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Frank55

Samsung,

I know what you mean about the mental effects of reading this forum. Some will claim traction has worked, others say it has not, some say Xiaflex has worked, others don't, etc.

Same point applies to the actual urologists. Some believe in traction, some do not, some emphasize surgery and do not think Xiaflex is effective, etc. Sometimes I think the doctors emphasize the approach that maximizes their income as opposed to what is actually best for the patient. These contrary opinions can really can do a number on "constant second guessing" of your approach to this condition.

However, this forum is still a huge light in a very dark corridor, if you know what I mean. Overall it is an enormous benefit to the community of men who have this affliction.

Just like surgery, I think Xiaflex is a hit or miss treatment. It does seem to work for some men. I've read glowing accounts of success and sad stories of failure. No guarantees.

I like TDix's approach. Use this forum's information but also recognize its limitations. Make your choices then. I hope Dr. Eid's treatment works for you. Please keep us posted.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

samsung

Quote from: Frank55 on October 22, 2019, 10:00:16 AM
However, this forum is still a huge light in a very dark corridor, if you know what I mean.

I'm sorry. I know you have good intentions. But I really don't know what you mean.

I don't get it. At all.

I have tried traction, xiaflex, VED, supplements. The curve has only gotten worse, the hourglassing since xiaflex is now much worse and just this morning my penis has gone numb after screaming at my father.

What light at end of tunnel?

Hawk and others have said that there is a solution for everyone here. What exactly are you talking about?

Either return my dick to pre-peyronie's or die. That is the solution. A solution is a cure. Anything else is lies.

If you see things from a different perspective, that's great for you. I am missing those components. I do not have the ability to lie. Believing anything else is delusion. And believe me, I would love to believe having an implant is good or that a 10 percent reduction in curvature is good. But that is a delusion. Only negative thoughts are accurate.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Frank55

What I meant was that having this forum has been very helpful to me despite that it does not offer a "cure" for every case. The knowledge I've gained from reading this forum is the light in the dark tunnel of peyronies. It has also been helpful to correspond with other men suffering from this condition.

I wish I could restore you (and everyone else on this forum, myself included) to their pre-peyronies state. No treatment for this affliction will do that, unfortunately.

There are no easy answers, but I've benefited repeatedly from the knowledge gained from this forum. I'd certainly prefer that to just accepting what my doctor recommends without question.

Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

samsung

Sorry. I am having a very bad day today. Had some very weird things happen to my dick. It suddenly went completely numb and sensation has not returned yet. And it hurts quite a bit and has for a few weeks. I need some sort of improvement like a drowning man needs air. Ever since the xiaflex my flaccid is smaller. It is turtling again and seems much thinner. Hourglassing out of control. Totally wigged out.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

Sam, so what does dr eid say as he's very honest and reliable?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

samsung

He hasn't got back to me yet. I left word for him yesterday but he was in surgery. I'm sure I'll hear back next week anyway. My 2nd round is scheduled for Nov. 16th. The only thing really, besides this stuff obviously, that I'm concerned about is he doesn't follow the modeling protocol I've heard described. By that I mean aggressive modeling the day following the 2nd shot. And I am worried that because I was unable to do proper traction with restorex because of the pain that xiaflex is a waste of time. Because if anything after this 1st round there is no improvement and it seems a little worse. Also, he doesn't do the shots guided by ultrasound. He palpates the plaque, which a lot of doctors do. But I don't feel that he injected dead into the proper places. Not 100% accurately where it really needed to be.

And don't take this as bad mouthing him. The jury is still out as far as xiaflex goes and he is still obviously a great surgeon.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

Well, I'd either trust him or look elsewhere.  You need to be confident in your doc!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Frank55

Samsung - Did Dr. Eid give you a pre-treatment assessment/statement of his opinion of the probability of success with the Xiaflex treatment? And the level of benefit he believed the treatment would produce?

Like "I think there is a good chance this will remove at least 75% of your curvature?" What did he tell you prior to your making a decision to proceed?
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

samsung

He didn't give me any pre-treatment statement of probability of success. And I do not expect anything.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Frank55

OK. So how was the decision to proceed with xiaflex treatment made? Even if Dr. Eid did not state his opinion regarding the probability of success (in terms of curvature removal), did he say at some point that he felt that xiaflex was the best approach given the facts of your individual case?
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

samsung

Not exactly. I sort of made the decision myself and advocated for it. I am against plication and grafting, as is Dr. Eid in my case. I am not badly curved enough nor have erectile dysfunction bad enough to warrant an implant. And so far I have seen no improvement in curvature from traction. So xiaflex is obvious choice for me.  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2